The Controversy Over Choice.

Many of us as parents make choices for our kids every day. We feed them oatmeal for breakfast instead of cookies because we know it is what will start their day in the best way. We choose to clothe them when we go to the grocery store because if not…well, we just do. We choose to send them to school every day because we know it is what they need to be educated and to provide an intellectual foundation for their future.

However, when a Deaf child is born parents do not have the choice to know the Deaf community by the medical staff at the hospital. Instead, we are cattle prodded to the audiologist and ENT surgeon who present us with options on the types of hearing aids we want to purchase. The medical staff does not provide us as parents the choice to speak to a Deaf person who is a member of the Deaf community. Would it not make sense that since we as parents are not Deaf and neither is the audiologist or the ENT surgeon, that they then give us an opportunity to speak to someone who is Deaf physically and culturally?

How can we as parents make informed decisions regarding the communication modality of our Deaf child without consulting the people who are experts at being a Deaf person? It would only make sense we should have at least the CHOICE! Nevertheless, that is not what happens. What does happen is we receive paperwork, handouts and a few flyers that references a paragraph or two about the Deaf community and the challenges that it brings to US as hearing parents.

Do you know that when surgeons publish studies about positive outcomes of implanted children, they are tracking the actual surgery and the success of the implantation, not the success of the child’s spoken language development 5-10 years after implantation? This is not shared with us and because we trust the medical staff; we roll with what they recommend. It makes sense in theory and I am not blaming parents for doing what they think is best with the information they are given. Who am I to judge other parents for their choices? However, some hearing parents choose to give their Deaf children ASL. There are many of us out there and we need to share our stories. It’s hard for me especially as l make my living by supporting the technological advances in medicine and support surgeons who save people’s lives with the technology my company has produced. With my experience, I have many perspectives, medical, technical and social. However, even with this knowledge and understanding, we still chose not to implant our child and we chose to give him a language, culture and community.

The AG Bell Association, an organization focused on listening and spoken language for deaf children, had their annual meeting last week. Meredith Sugar their President gave a public address at the convention, which sparked a lot of discussion on social media among the deaf community. Meredith is a hearing person with a deaf child. I think an oral deaf person would be better suited for this position. It is strange to me that hearing people continue to make decisions for what is best for deaf people. I feel compelled to address some of her statements in the public address she gave at the conference. They are here below:

She states: MOST OF YOU, I BELIEVE, and SHARE MY VIEW THAT THE TIPTOEING AROUND IS DONE. THAT THERE IS ABSOLUTELY NOTHING, NOTHING WRONG WITH FINALLY SAYING, ALBEIT RESPECTFULLY, THAT WE SUPPORT THE GOALS OF FAMILIES TO EQUIP THEIR DEAF CHILDREN TO LISTEN AND SPEAK…..ACTUALLY, TO HEAR WHISPERS, TO SING (IN TUNE!), TO HEAR SOUND UNDERWATER AND WIND BLOWING IN THE TREES. THE BAR HAS BEEN RAISED.

My response: What about the children that you instruct in listening and spoken language and still cannot hear whispers, sing, and hear sound underwater or the wind blowing. What do you do with them? What option or CHOICE do you give those parents? Where do you send them when LSL does not work?

She states: THE SPEECH BANANA IS NO LONGER LOW-DECIBEL ENOUGH…..BEING TOLD THAT LISTENING AND SPOKEN LANGUAGE IS AN OPTION AS THE LAST ONE IN A LIST OF FIVE, IS NO LONGER PROFESSIONAL ENOUGH

My response: Listening and spoken language is not the last one in a list of five. It is the first one and sometimes the only option given. I am not sure where she is gathering this data.

She states: HAVING four LSLS IN A STATE OF MILLIONS, AND BEING TOLD THAT OUR DEAF CHILDREN MUST USE, OR BE TESTED IN, SIGN LANGUAGE, And ARE NOT TOLERABLE

My response: This statement regarding the SB210 bill in California is false. I personally attended the first meeting where all of the heads of the California deaf and oral schools agreed upon the terms of the SB210 bill. There were oral schools alongside bi-lingual deaf school reps supporting the language acquisition of deaf children and supported these children be tested in their method of communication whether that is English or ASL. Lead-K and SB210 is about being kindergarten ready. Testing to make sure children do not end up behind their peers. It is not about testing deaf children in sign language.

She states: I DON’T GO AROUND TELLING PEOPLE ABOUT JONAH’S SUCCESS TO BRAG, OR BECAUSE I WAS SOME SPECIAL KIND OF MOM. YOU SEE, JONAH’S NOT AN ANOMALY. HE DID NOT JUST “GET LUCKY” AND HIS MOM DID NOT JUST “ROLL IT ALL ON RED.” THIS TYPE OF SUCCESS OF DEAF CHILDREN IS NO LONGER THE EXCEPTION – IT IS BECOMING THE RULE. KIDS ALL OVER THE WORLD WHO ARE TAKING THIS LSL PATH AND WORKING HARD ARE ACHIEVING THESE RESULTS. MOST MAINSTREAM BY FIRST GRADE.

My response: Kids all over the world are working hard to listen and speak. Why make them work hard every day to conform to their hearing parents. Why? Because it is easier for us… because then our deaf child will be able to fit in at our family gatherings, fit into our mold. Why not let the child just be the child. Many parents cannot just accept the blessing we have been given. In addition, the last statement MOST Mainstreamed by first grade. What happens to those who are not mainstreamed by first grade? Where do they go? I want to know about the non-success stories, where do they go? Let us worry about the other kids who are not in that “most” statement, they have to be cared for as well. It is almost like they are being swept under the rug.

She states: I’LL TAKE THIS FURTHER AND, I REALIZE IT IS NOT QUITE A PERFECT ANALOGY, BUT I COMPARE IT TO A CHILD BREAKING THEIR ARM ON THE PLAYGROUND. AT THE E.R., THE DOCTOR DOES NOT START BY SAYING, ‘WELL, YOU HAVE OPTIONS HERE…..ONE IS ACUPUNTURE…..ONE IS MASSAGE….AND OH YEAH, THERE’S THIS THING CALLED A CAST.” THE CAST IS THE STANDARD OF CARE. NOW, IF THE FAMILY HAS VARYING BELIEFS OR DESIRES, THEN FINE, THE OTHER OPTIONS GET CONSIDERED OR FOLLOWED. HOWEVER, THAT CAST IS MENTIONED FIRST AS THE STANDARD OF CARE. WHY OH WHY DO WE FEEL SOME SORT OF GUILT OR TREPIDATION STILL ABOUT MENTIONING LISTENING AND SPOKEN LANGUAGE AS THE VIABLE OPTION FOR OUR CHILDREN?

My response: Really, is she living under a rock. #1 breaking an arm is nothing like being a Deaf person… period. #2 listening and spoken language is mentioned first at least in the circle of people I know. ENT’s and audiologists are trained to give listening and spoken Language as a first option. ASL is at the bottom of the list and is viewed as a last resort.

The rest of the speech I cannot even address! I however, will say this, now that the world is being educated nationally on what Deaf really looks like, with the successes of some Deaf people (Nyle Dimarco), now the AG Bell Association wants to take the stand that they have been silent all these years and are currently the victims of the Deaf extremists. Enough already. Let the Deaf community have their moment and let us make sure that the children are ready to face the world with a robust language before they go to kindergarten.

Finally, another voice of reason and fact to counter the misinformation in the Sugar address to a very single-minded crowd. Listening and spoken language is desirable, but not the only road to happiness, literacy and education, nor is it the best road. It is just one of many avenues and a narrow one at that.

What you fail to realize is that I myself am in the medical device industry and have access to much more information that what is provided by the ENTs and audiologists. I’ve had a few friends who have repped and sold for advanced bionics and a few other Ci companies. Based on the data I received directly from them and Surgeons I spoke to we made a conscious choice to not implant. We don’t see the need. If he wants to when he’s old enough to make the informed decision himself. We will be ok with that. Until then he’s perfect just the way he is.